Am I Worth Less?

One of the hardest parts about having a chronic illness is feeling like I have less value because I am not contributing as much to the community as my peers. Before I got sick I was working toward pursuing a career in journalism. I took internships, worked part time at a newspaper, and was excited to continue my journey working at Seventeen magazine to hopefully impact young women in a positive way. I have always felt that words are one of the most powerful tools we have, and all of us have a wonderful opportunity to lift others up and make them feel less alone in this big world.

I always dread the question, “So, what do you do?” when I meet someone new. I hate explaining right off the bat, “Well, I got sick when I graduated from college, so I’m trying to get back on my feet and am working on getting my health in line.” Over five years later now I have made leaps and bounds in progress, but I still am figuring out how to manage what I’ve begun to accept as my new normal. Not only is my answer incredibly awkward, but I also just feel so lame not having a cool job or anything to show for my life. I worked so freaking hard before I got sick and have absolutely nothing to show for it anymore. The internship I had at a national news company isn’t relevant anymore, and my job at Seventeen wasn’t able to materialize into what it could have because I couldn’t even walk down the driveway to the mailbox when I first got sick. My illness didn’t just take my body away from me; it took away every sense of normalcy I had ever worked to create. I have nothing to be proud of, and feels like I can’t make an adequate contribution to society anymore. I have relied on others to take care of me, when all I have ever wanted to do was be able to take care of others.

If anyone who had a chronic illness told me they felt worthless, my heart would feel completely broken and I would try as hard as I possibly could to show them what an enormous, ugly lie that was. People shouldn’t feel like they don’t have worth in this world just because their body doesn’t work the way it’s supposed to. Our value does not reside in what we do — or don’t do — for a living, and people can still change lives when their bodies don’t work properly.

Whether or not you are a Christian, I think the Bible has a really beautiful sentiment about our worth as human beings. Psalm 139: 13-14 says, “For You [God] formed my inward parts; You knitted me together in my mother’s womb. I praise You, for I am fearfully and wonderfully made. Wonderful are Your works; my soul knows it very well.” This doesn’t say that we have value because of our job or what we do; it says we were born having value. We are made in God’s image, and He only creates beauty for the world. I think it’s very powerful knowing that even before ever doing anything in the world we have irreplaceable value. Just ask a mother of a newborn baby; she will say that her child means absolutely everything to her, and that is merely for existing, it isn’t anything he has done to make her feel this way.

I am a firm believer that everyone has a purpose in the world and can make a difference in a way that no one else could. Just because you are bedridden or need to be taken care of absolutely does not mean you don’t have value in the world. You have qualities to offer people that make you absolutely irreplaceable in their lives, so we need to stop telling ourselves the lie that we aren’t as valuable because we are different.

On the other hand, I understand the ache that is in your heart for the opportunities you have missed and feeling like some of life has passed you by. I don’t have the resume I would have had if I hadn’t gotten sick, and there are a lot of experiences I missed out on. It’s weird listening to my friends all talk about what they’re doing at work and how comfortable they are there. I still remember working at the magazine’s office like it was yesterday, but I also think that experience was so different because you’re the lowest on the totem pole. Dealing with an illness does teach you what is important in the world, though, and gives amazing perspective people often don’t have until much later on in life. It teaches you to hold on to all the amazing blessings you are given, because sometimes they can be fleeting, and to be thankful for the people closest to you. It teaches lessons of patience, hard work, and resilience. You learn what it’s like to be empathetic with people, rather than just offering sympathy, and you are given an opportunity to be a light for others who go through the exact same things you deal with on an every day basis. Chronic illness builds beautiful warriors who have such important lessons they need to share with the world.

I understand questioning your worth as much as anyone else with a chronic illness, and I am right there with you trying to find my own purpose. The words I wrote on this page make sense to my brain and I know that my life has incredible value, but my heart sometimes has a hard time making the connection. I feel lost in a big world that doesn’t understand me, and I am getting swallowed up in the lies I tell myself at night. Being sick has taught me I’m a fighter, though, and I’m not going to stop searching until I figure out what I’m here for. Deep down I know I have an important role in the world. I just might take a little longer to figure out what it is and that’s okay.

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Crispy Pesto Salmon

One of my best friends, Nicole, called me from Trader Joe’s the other day because she knows how much of a TJ’s fan I am. She wanted to know about a few of the items there, and after chatting for awhile I decided she would probably love to try my crispy pesto salmon. It is absolutely delicious and has the perfect little crunch over a creamy basil pesto sauce. Hungry yet?

Gluten-free Crispy Pesto Crusted Salmon

Okay, so here are the ingredients:
-Wild Caught Salmon (Boneless)
-Pesto
-Mayonaise
-Lemon Juice
-Corn Flakes Crumbs
-Extra Virgin Olive Oil
-Sweet Potatoes
-Broccoli
-Salt
-Pepper

pesto salmon ingredients

Step 1: Preheat oven to 400°F. I almost always do 400 because it’s just easy to remember and 50° above or below 350° and 450°, so I figure it works no matter what.

Step 2: Chop up the sweet potatoes and broccoli florets and put them on a cookie sheet. I always do the veggies first so I can use the same cutting board and knife for the meat. It makes cleanup so much easier having fewer dishes! I also always use aluminum foil because it’s easier to clean off a pan this way.

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Step 3: Drizzle EVOO, salt, and pepper on the vegetables. Feel free to get crazy and add spices like cinnamon or turmeric to them if you’d like! They’re known for regulating blood sugar and helping with inflammation.

Step 4: Pat the salmon dry, and cut it into however many servings you’d like. It doesn’t matter how large or small the fillet is.

 

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I cut each of these into 3 filets.

Step 5: Put the salmon on the same pan as the veggies. You can drizzle a little EVOO on the pan before placing it there, and then cover in salt and pepper.

Step 6: Make the pesto sauce. Mix 4/5 parts pesto, 1/5 parts mayo. It doesn’t really matter how much mayonnaise you decide to use, but I always like the pesto to still have a very green color. It just looks a little more pale when you put the mayonnaise in. I should note that I hate mayo in everyday life, but it adds a good creaminess to this dish!

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Step 7: Spread as much of the sauce as you’d like on top of the salmon filets. I usually make it a little thick so there’s more flavor, but if you want it super-crispy, be more conservative with the sauce. Then, sprinkle as much of the Corn Flakes as you’d like on top of the mixture on the salmon, and put it in the oven to cook.

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Step 8: Bake until the salmon is ready (It depends on how well done you’d like it), and the vegetables begin to brown.

Step 9: While your food cooks, make the extra pesto sauce. Mix the same ratio of pesto and mayo, then add a few squeezes lemon juice, a pinch of salt, and a few pinches of pepper.

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Once everything is done cooking, take it out of the oven and top with as much of the extra pesto sauce as you’d like. Robert likes it on his veggies too, but I only eat it on the salmon because I think that’s kind of weird and I like the vegetables just the way they are.


Post a comment if you decide to try this how you like it! I didn’t post a picture of the end result because 1) I was too hungry and took a few bites before I realized I probably should have gotten a pretty picture and 2) I don’t know how to make brown things look appetizing. The end of this reminded me of Thanksgiving dinner — it tastes amazing but no matter how hard you try to make your plate look good, it never in a million years will.

Strange Things I Miss

Today happens to be a very POTSie day. Luckily, dizzy spells are much fewer and further between, but I hate when they decide to come around with a vengeance. I have been doing a new exercise protocol lately that is supposed to make me feel worse before I feel better, but I am optimistic about how much it could help me in the long run.*

Anyway, I am currently working on a post about what my POTS timeline has looked like, and the improvements I’ve made, as well as the things that are still different in my life post getting sick. It’s been so interesting for me to look back at different things I wrote throughout the years, but is great to have something tangible to look at regarding my life.

Certain things are becoming more normal, and I am pulling off looking like a normal human being like a pro. I have looked pretty normal since getting sick with POTS, since it’s an invisible illness, but I used to have to ask for help much more often. Now I think people around me often forget completely that anything is wrong with me! I hope one day this will be true. Despite being sick for over five years now, I will never stop hoping to get back to complete normalcy. I have a million different things I’m working on for the blog, so today I wanted to just touch on a few things that have been different for me the past half-decade.

1. I can’t enjoy taking showers. Sometimes I hop in a hot shower just because I am in pain and want something to release the tension in my muscles, but for the most part they’re just exhausting. I usually choose between washing my hair or shaving if I’m going to stand the whole time, and have to alternate between the two or rest quite a bit longer after I’m done. Does anyone actually find showers enjoyable? I can’t remember anymore; now they’re just exhausting.

2. I’m not very extroverted anymore. Before I got POTS, I was super extroverted. I was always around people and had an enormous circle of friends. Mentally, I still want to be doing a million things, but my body isn’t up to that. I feel tired and drained from doing too much, so I don’t go out nearly as much as I used to. When I do, it’s usually dinner or dessert with just one or a few friends, rather than hanging out in a giant group. When I first got sick I really couldn’t do anything other than try to stay optimistic, rest, and work as hard as possible to take care of my body so I could hopefully get better one day. I think some of my friends who weren’t around might have felt like I was neglecting our friendship, but in reality I just couldn’t function. I have lost touch with people I sometimes still miss. Getting sick really does show you who is going to be around for the long haul, and makes you see who has unconditional love for your friendship.

3. I miss writing for hours on end. My favorite thing in the world has always been writing, even back in elementary school or high school when writing wasn’t supposed to be fun. I always said English was my favorite subject, even when other kids would say “lunch,” “recess,” or “gym.” I loved learning more about our language and how to write things that people would enjoy reading. It’s difficult for me to sit at a computer and type for hours without feeling it after, and then being in a lot of pain for days after. I am very slowly working on endurance, and hope to be writing more and more.

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4. I miss being a helper. Before I got POTS I was independent and strong. I loved helping other people in any way I could, and was always there to do acts of service. There is nothing I hate more than having to swallow my pride and ask others for help. I’ve had to do that a lot the past few years, and it honestly doesn’t get much easier. I hate inconveniencing others, and I have a really hard time telling people I need something. I am still working on communicating better, but in the meantime I use my writing as an outlet.

5. I wish I could have my old dreams back. I dreamt of living in New York City as a magazine editor, and thought about how many lives I would change through my writing. I wanted to be able to support myself, pay my parents back for school, and afford my own life. I wanted to keep pushing myself and training for another half marathon, and I wanted to collect a million new skills from the new people I’d meet.

I have set new and more realistic goals, and am focusing on getting my body in shape so I can reach higher. Despite my life being much more complicated now, it’s also somehow become more simple. I realize how much I value the people who are in my life, and how important they are compared to everything else in the world. I’ve learned to appreciate the many blessings I do have, and how to live in the moment better. I still feel like I’m looking to find my purpose in the world, but I also trust God now more than ever to have better plans for me than I ever did for myself. I’m just trying to figure out what that is now.


*For any POTSies who are curious, I am doing the Levine protocol.

Delicate

To say I’m not self-conscious about my chronic illness would be like saying I didn’t care what other people thought of me when I was in high school. Neither is true, but high school was a lot easier because at least everyone else felt the exact same way — and I knew it. Despite feeling self-conscious about the shape of my body or being worried about my future, I knew all of my classmates felt the same way I did. That brought a little glimmer of comfort even in all the confusion.

What’s frustrating about POTS now is that I feel so alone in it. I don’t have a close knit group of friends who are chronically ill, and frankly, that sounds exhausting. We would never be able to make plans with each other because one of us would always be feeling sick, and it would be a whole lot more difficult getting from point “A” to point “B” without having someone who could carry two water bottles or still think clearly even if it gets really hot outside. If I had known in college that one day I wouldn’t be able to carry a Smart Water bottle around for myself I would have been terrified for what my life was going to become.

I freaking hate having a chronic illness. I hate how it makes me feel, I hate that it’s so unpredictable, and perhaps most of all, I hate that I ever have to rely on other people to take care of me. I have always been super-independent, and despite being sick for almost five years now I am nowhere close to being used to all of this. Let that sink in. I have been sick for almost 1/5 of my life now, and I am still not even close to being used to it.

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Every morning I wake up and want to be able to do everything for myself. I want to cook, then clean up the mess in one sitting. I want to be able to drive to meet my friends for lunch without worrying about where they want to go geographically because my arms might hurt terribly from driving too far. I want to have enough energy and strength to go to work, think straight with no interruptions from dizziness or brain fog, and get through an entire day without hurting and becoming stiff — then do it all over again five days in a row. I don’t understand why all of these things that feel like very basic human rights have been taken away from me.

I miss my independence so much I want to scream. I push myself to limits that I know are going to hurt me because I don’t feel like asking for help with little tasks. In my mind, people are going to get annoyed if I keep asking for help with so many seemingly easy things, and it’s not worth losing all of my relationships to feel decent. My brain understands that the people who love me are happy to take care of me, but my heart feels heavy and tight with frustration. I often feel like a burden — not because anyone has told me that I’m one, but because I can’t take care of myself the way I used to. I want to be the one to take care of my parents and repay them for taking care of me for more than just the 18 years they expected to. I want to be able to support myself financially, and I want to feel like I can give acts of service to my loved ones more than I am able to. I want my friends to understand the way that I feel and to know what it’s like to lose every sense of normalcy your body has grown accustomed to — but only for a day so that they can know what my every day is like and why I’m often so tired. I want people be able to feel my frustration so they can really understand how much small things impact me in my day-to-day.

I could write a book on all the things I miss that are really normal. I miss being able to make chocolate chip cookies from scratch all by myself, and I miss doing my own laundry (Seriously!). I miss going shopping without eventually feeling nauseous and dizzy. I think what I miss most is going places by myself. Whether it’s being able to drive into the city to walk around and explore by myself, or taking a mini road trip to see a friend, I wish I could drive myself around without having to rely on loved ones to chauffeur me around. I am 27 years old and want nothing more than to be able to sit in traffic by myself to see my best friend just one a state away whenever I want. I either have to wait until someone can drive me, or have her make the hour-and-a-half trip by herself to come and see me. Both the little and big things about being sick bother me, and I honestly don’t know if I’ll ever fully be used to being different this way. I hate asking people for help, and haven’t gotten a lot better at it over the years. POTS has made me realize that it isn’t always a person who can break your heart. There are other things in life that can take a little piece of it away, too.

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Counting Spoons And Stars

My life hasn’t been normal for a twenty-something living in the suburbs of Washington, DC. Just 18 months after I could legally drink, I found myself stripped of all the independence I had spent time gathering while traveling across Europe for a summer program, working and taking care of myself at college, and moving to New York City even though I didn’t know anyone there. Instead of gathering more life experiences that would shape me into who I was becoming after school, I was thrown into learning the importance of appreciating even little moments in difficult days, and I was facing health issues that most people twice my age hadn’t even begun to deal with yet.


I know I’ve talked about The Spoon Theory some on here, but I saw an interesting graphic on the Dysautonomia International Facebook page, so I wanted to write a little blog post to go along with it.

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I would switch around a few of these. For example, I think taking a shower and shaving or washing my hair takes more than 2 spoons, but going shopping only takes 3, depending on the task (as long as I don’t have to push a cart or carry a lot). I have always been a really big fan of a nice, hot shower, but I honestly don’t even remember my pre-POTS showers. I don’t remember what it’s like turning the dial to the “H” without knowing that my heart is about to start racing like I’m running a marathon, and allotting some time to lie down after I’m done shampooing. I do remember the days I couldn’t wash my own hair, though. I remember first getting sick and not being able to stand in the shower because I would pass out. I remember sitting down in the bathtub in my pink paisley bikini so my mom could shampoo and condition my hair for me since the room was always spinning around me and I couldn’t stand by myself for more than a few minutes. In hindsight, the way my hair was washed is really similar to the way my dog, Macy, gets her hair washed now. We both just sat there and let someone else do a task we  are less than thrilled about, but need to have done. I was 22 years old, had just graduated from college, and could not take care of even my most basic needs.

Despite making slow improvements with POTS, I still always look fine, so people usually cannot tell if I’m having a “good day” or “bad day” just by looking at me. Nobody else can see the way my vision blacks out whenever I stand up too quickly, or when my pain is acting up. Whenever I see someone pop right out of bed when they wake up on television I laugh to myself and think, “That’s so unrealistic!” then I quickly realize that it’s actually most people’s reality. Most people can jump right up from laying down to a standing position and not feel repercussions from their body. I don’t remember ever being able to do that, but logically I know that five years ago I would have been able to. Actually, come to think of it, it probably would have really freaked me out if I couldn’t pop right out of bed all of a sudden!

There are many things that I don’t remember from my pre-POTS life. I don’t remember what it’s like living with a “0” on the pain scale, I don’t remember being able to be low maintenance when traveling or going out with friends, and I don’t remember what it’s like feeling like you’re in the same boat with all your peers. College is so great because even though you are all doing such different things, you are all working toward some sort of career goal. I get sick of explaining what POTS is over and over again, and I hate the look of pity in someone’s eyes after I get done telling them about how even though I am still young, I ended up with a life-changing health condition at the very beginning of my twenties.

There are a lot of things I do remember so well from my old life, though. I remember going outside and finding out it was a beautiful day, so going for a long run. I remember deciding on a whim to train for a half marathon, and bumping up my mileage with ease. My brain remembers going to work and sitting at a computer all day long and all of the projects that I did, but I don’t really remember how it felt. I think about it now and wonder how I was able to do all of that without feeling stiff as a board and paying for it for the rest of the week. I have no idea how I ever survived without a foam roller or physical therapy. Did my body really once not hurt? Why didn’t I take advantage of that more?

I have been blessed, though. The crazy thing about POTS is there isn’t a lot of treatment that helps you get better, other than hard work in the gym (Which is done on the recumbent bike and with tiny hand weights), a good diet, and a great deal of luck. Getting sick has made me learn that there is no doubt in my mind that God does exist, and He has so much power and love to give. I still can’t believe how much more clearly I can think without all of the dizziness and brain fog, and I feel blessed to have good days mixed in with the bad. I actually think that most of the time I am probably on the higher end of the “happy scale” than a lot of twenty-somethings because I have learned to find the joy in the little things in life. I feel happy when I get to meet a new dog, I love being able to go outside for long and leisurely walks, and I really feel at peace every night when I look up at the stars. It’s really amazing to realize that even with so many planets and heavenly bodies so far away, my Creator still loves and cares about me. I always feel small when I think about how far away the stars are and how many other people there are in the world, but it really is amazing that God has a plan for each and every one of our intricately detailed lives.

I still don’t know why I got POTS or what my life is going to look like with it moving forward, but I am going to continue to share my journey and what I’ve learned with people, and I am going to keep working toward a more normal life. I’ve used a few spoons writing this and am getting dizzy because I really need a salty lunch, but I will be writing about The Spoon Theory again on my blog in the next week or so. I want you all to know what I use my spoons on, and how stealing a spoon from another day can be great because I am able to enjoy outings with friends, but it makes playing catch-up difficult the very next day. I, as well as all my other spoonie friends, just want to feel like everyone in life just gets it. That won’t happen unless we begin speaking out about our chronic illnesses, though, so I am going to continue being vocal about what life looks like on the inside for someone with a chronic illness.

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Please take a minute to read this article by Christine Miserando about how she created The Spoon Theory. It is explained so darn well here, and I — along with every other person with a chronic illness — would give anything for people in my life to actually understand what it means to use spoons throughout the day.

Chronically Positive

Who all remembers when I had my “Chronically POTSitive” blog?

I initially created it for a class I was taking for my Master’s, but it was also a really fun way to start blogging and connecting to others with chronic illnesses. I have long given up writing on that — this blog is where my heart lies — but I have kept the mindset of being chronically positive. I’m not going to link any of that content because I wrote much of it lying dizzily on our living room couch so I’m a bit afraid of the errors that are surely scattered throughout my posts, but that is what initially made my heart feel open to the world and to share so much of my journey with others.

There are a few reasons I choose to be an optimist, and always try to look at the glass as being half full, rather than half empty. First, I’ve found that it’s actually a lot easier living as an optimist. Knowing that life is going to get better, even if it’s not necessarily there yet is such a powerful thing. I strongly believe in the power of positive thinking, and I think dreamers often get some of their wildest desires by putting them out into the world and fighting for what they want. Second, it is far less exhausting to be excited about the future than dreading it. Whether it’s with a job, dating, health, or anything that affects your quality of life, it’s always a lot easier getting through a bad day knowing that things will eventually take a turn for the better — even if it’s not that same week or year.

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I got sick with POTS almost 5 years ago now, and I still remember my parents telling me every single day that I was going to get better and I would be able to walk around without fainting again, spend time out with friends, and live a beautifully joyful life. My dad told me that things would get better every single day when he drove me to the gym to do my 20 minutes on the recumbent bike after his long work day in the city. My mom hugged me while I cried on the bedroom floor because I was tired of not being able to stand on my own or go to the bathroom in the middle of the night without calling to wake someone up because I might pass out on my way there. We played “Would You Rather” late into the night when I couldn’t sleep because of my heart palpitations and chest pain. I looked forward to our little games despite the circumstances, and we always made it a point to laugh every day, even when I felt like the world was crashing and burning around me. I got sick with POTS overnight with no warning, but despite being bedridden and feeling sick 24/7, we still managed to find joy in my life.


Glasses are used to be filled and emptied. You end some days with a completely dry glass, but remembering that you can still fill it with something even better is so important to continue moving forward. Let’s say you have a full glass of lukewarm water that gets knocked over and empties completely on the floor. It sucks that you don’t have a drink anymore, but now you have room to fill it with something better — like chocolate milk or iced tea. Getting rid of the water made room for an upgrade. Sometimes life isn’t fair and doesn’t go the way you hope it will. Your heart gets broken by the wrong guy and it feels like the end of the world until you learn you’re better off without him. Then you meet the love of your life, and you realize that getting dumped was actually the best thing that ever happened to you, even though your heart hurt terribly at the time, because it allowed you to find the one person you never want to live without.

POTS was heartbreaking, scary, and life-changing. My arms hurt while I am writing this, and I wish I could sit at my computer and pour out my heart on paper all day long. I want to travel without feeling like I’m high-maintenance, I want to run again, and I want to chase the dreams I had in college still without having to change them because of my illness. If I hadn’t gotten sick with POTS, though, there’s no way I would have really met Robert. I would have moved to New York City and continued to write for a magazine, and I wouldn’t have been in the area before he went on his deployment. I would have missed out on so many great memories with my family, and I would never have seen just how many people love and care about me. My heart may not work like a normal one anymore, but it’s grown several sizes larger to hold all the love that is in my life. People are absolutely the most important thing to me, and getting to hold so many hearts close to mine means infinitely more to me than any job or amount of money ever could.

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God works in mysterious ways, and although I am not sure why He hasn’t decided to give me back the body I used to have, I still have faith that I will have a joyful and fulfilling life. As my sweet friend Sophia often said, “The best is yet to come.”


After I wrote this post I happened to stumble upon this article by Forbes. Optimism is a life changer. Create it one step at a time and I promise you won’t be sorry.

Choosing A Season Of Joy

I’m baaaaack! A lot has gone on in the week and a half I took off, but I’m ready to write again and update you all on some new developments.

It’s been crazy rainy lately and my POTS symptoms seem to get aggravated during changes in weather. Something interesting about POTS is that it affects a bunch of important organs, and has trouble finding homeostasis when even minor changes are introduced. My physical therapist takes my blood pressure and heart rate every single session — before and after and sometimes during my workouts — and it’s crazy to see that whenever I feel symptomatic my blood pressure is super low, and my heart rate is higher than usual. One cool thing about people with chronic illnesses is that we really know our bodies well. I can almost always pinpoint what is physically wrong with me because of the way my symptoms are behaving. We are going to start looking at the barometric pressure and my blood pressure throughout the day, just as a little test to see how they compare since both of us have noticed this trend. I can’t wait until POTS has been studied better and we can just look up a million and one facts about it, and one day there can actually be a cure.

Which leads me to my next point. I have been trying to be really cognizant of the blessings I have in my life lately. It makes every obstacle a whole lot easier to tackle, and I have felt more peace and joy by looking at the great things God has given me, rather than focusing only on the pain or discomfort. Today, for example, I saw a sweet little bunny outside on our front lawn. He was eating part of our flowers, but I sat and watched him until he was ready to leave before I walked past him. While I was sitting on the porch I saw a little red robin fly into a puddle next to our yard, and he started to fluff his feathers and bathe himself. These two little moments made my heart so warm the rest of the night.

As far as wedding planning goes, we keep making slow and steady progress. Robert and I got our wedding bands this week and they’re absolutely perfect. I keep putting mine on every time I go to his house because I love it so much! I am super sentimental, so I love that he picked everything out for me, but it’s also just so me. I love his too, and I think he looks super handsome with a wedding band. I wrote a little message to him in it so he’ll always be reminded of how I feel when he looks at it. 🙂 Despite all the stress of planning, I keep realizing how fast this time is going by and reminding myself that the primary feeling of this time of engagement should be joy. We have four months to go as of today, and I am so, so excited.

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The ER And My Heroes

Hello, blog family, I’m finally back! I had a pretty rough week. I haven’t really gotten much of a cold/flu/virus sickness since getting POTS because I am so incredibly careful with taking care of myself and not hanging out with people if they’ve been sick recently. My cardiologist has always emphasized the importance of a flu shot and taking preventative measures with POTS because being sick makes my chronic illness a lot more difficult to manage. Now I see why.

My parents took me to the emergency room just over a week ago because I kept getting sick and passing out on my way to or from the bathroom (Or the bucket next to my bed). That night was weird because I had decided to sleep at 8:30 due to extreme nausea. I had been in the car for eight hours on our way home from Boston that day, and hadn’t felt well most of the trip home. I typically get a little nauseous on car rides — particularly long ones — so dismissed it as a POTS thing and ate a few ginger chews in hopes of feeling a little better. There weren’t any signs of having any sort of bug, except for the fact that I almost fell asleep while we were driving a few times, which is really not a typical Krista move.

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My Instagram story that night. Yikes!

Anyway, despite going to bed early, I woke up every hour with really bad abdominal pain and couldn’t fall back asleep for more than a few minutes at a time. Finally, around 10:30, I started getting sick. As most of you know I still live at home, so my poor mom had to come in and check on me a million times to make sure I wouldn’t faint and hit my head on the hard bathroom floor. Finally, she came in and told me to get dressed because we were going to take a trip to the emergency room.

Surprisingly I didn’t put up a fuss. I slowly walked back to my room and threw on my Nike sweatpants and “Army Girlfriend” sweatshirt. My mental state was in tact, as I debated putting on my engagement ring. I quickly decided against it, and grabbed Robert’s dog tags instead. I figured just on the off chance something was really wrong I wouldn’t want my ring to get lost during any hospital drama, and that the dog tags would be pretty easy to wear throughout any procedure.

My dad helped me to the car as I clutched a big, white plastic bucket in my lap. Luckily I didn’t need it, as I had cut myself off of food and water an hour prior. Not drinking made me feel sick, but it also left my stomach empty, which was just what I needed.

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Five long hours, two IVs of saline solution, and a couple of Zofrans later, I finally began to feel better. A few different things ran through my mind as I sat on my little white hospital bed. First, it’s crazy that nurses work all hours of the day. Like, we got to the hospital at 1-something, and didn’t leave until a little after 6 in the morning. There were people running around doing their job like it was a normal hour. Second, these people put their own health at risk by being around people who are sick with a lot scarier things than just the stomach bug that I had. Even towards the beginning of my visit I tried to stay far away from the people who were caring for me because I didn’t want to spread my germs. I quickly realized they weren’t afraid of getting my virus when they poked and prodded at the EKG  electrodes I am all too familiar with. It was hilariously comforting having some normal medical procedures done when I felt like hell. I knew they weren’t going to help me feel better, but it was nice having something that made it feel like a normal trip to the doctors. Lastly, all of my nurses were kind and made me feel comfortable — at least considering the circumstances. It makes a world of difference when someone takes care of your feelings along with your symptoms. I always think back to the nurse who told me I’d have to endure my awful POTS symptoms for the rest of my life and that it wouldn’t get better, and I am so grateful that she was wrong. Hope and comfort are both such healing things, and I’m thankful for each and every person who decides to be encouraging and kind to the people they come into contact with.

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Mom snapped an update for everyone when I was all taken care of and on my second IV.
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One hilarious thing I noticed was that I was in such a dazed state when we left the house that I put a sock on inside-out. Oops.

I am completely better now, and am looking forward to resuming my normal life, writing schedule, and wedding planning — which I will have a million updates on in my next few posts! I am also going to keep pushing forward in my journey get healthy again. I have a few exciting diet updates I’ll be writing about on here, and I will continue to work hard at PT and the gym to keep my symptoms at bay. Here’s to the beginning of a new week!

Marks In Time

A lot can change in a year.

Time is a funny thing because as intangible as it is, it sometimes feels very concrete. There are certain things that make time more significant. You know both college and high school are going to last 4 years, your birthday will be around again exactly 365 days from the last one, and the Christmas season is every 48 weeks or so. Having a chronic illness makes time a little fuzzy sometimes, though. I have had POTS since August of 2013 and can pinpoint different phases throughout my journey, but it feels weird that I’m coming up on five years now. I have been fighting for my health longer than the time I spent in college, which is super weird. When I think about going to Mason I have such different memories from each year I was there. When I was a freshman I was timid and shy. I didn’t feel like I had a place I belonged, and I left campus to stay with my family just about every other weekend. I liked my classes and had a couple of really close friends I would keep for the rest of my life, but I was still figuring everything out.

My sophomore year was a blast. I made so many new friends, and I had a group of people who felt like home. I made friends with the girls I would call my roommates the next year, and I was an editor for the school newspaper. I didn’t find as much confidence with writing until later in college, but I looked forward to every day I would spend in the Broadside office with all of the other aspiring writers. Sophomore year was spent finding myself, and learning what I wanted to do the rest of my time in college.

Junior year was probably my favorite. I loved feeling secure with some of the best friends I could ever dream of, and had a great balance of work and play. I turned 21 that year and will never forget that birthday. I waited to drink until I turned 21, so all of my friends crammed into our little apartment living room to celebrate with me. People brought six packs of different things to drink, but I stuck with a cherry Smirnoff Ice. I was surprised it didn’t taste very alcoholic, and took my time sipping on my new favorite drink. That year we spent long nights dancing at the bar down the street every Thursday, and still had the energy to go out and explore restaurants and museums on Friday and Saturday.

Senior year before moving to New York is a blur, but my last semester of college spent in the city was one of the best memories from those four years. I had my fair share of adventures, long hours working overtime in the office, and despite blocking it out most of the time, I had my share of lonely nights in that little shoebox apartment on the eighth floor. New York was definitely an enormous highlight of my college career, and I’m still so thankful for each and every memory I gathered from that time.

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My mom took this picture of me my first month being a New Yorker. I felt so at home rushing around the city in my little dresses and tights, and fit in with all the editors at Seventeen by living on coffee, books, and cupcakes.

Do you see how easy it was for me to create four years of my life?

It hasn’t really been like that again until recently. The first few years of getting sick really blur together. I have a little bit of a timeline I can create, but it isn’t the same concrete, certain one I have from every other year of my life.

I got sick and went to a million different doctors. I had my heart hooked up to echocardiograms, holter monitors, and got tested for diseases I had never heard of. I watched The Food Network, then I watched The Office, then even later I started a new series called Pretty Little Liars. I went to the local shopping center with friends and found myself lying on the lobby floor of the movie theater to keep from fainting. I went home and cried, and wondered why I was the person God allowed to get sick. I remember nights of lying on the couch and having conversations with friends about the outside world I no longer felt a part of, and wondering aloud if I would ever be able to have a normal twenty-something life again. I remember getting my first job while I was home sick, then having chronic, debilitating pain from using my arms too much. I was diagnosed with Ehlers Danlos Syndrome, and had to stop doing the one thing that made me feel kind of normal and independent.

I remember moments, but I have no idea when they happened.

I also don’t know when I started getting better, as it’s been super-slow, but there are a few things that offer great markers of healing. One year ago my mom hosted a Bunco party at our home. She always takes the month of February, and I often get invited to come play with her group when it’s held at our house. Bunco is essentially a game of rolling dice and giving an opportunity to catch up with friends. Last year I remember finishing the game and going upstairs and feeling heartbroken at all the pain I was in — just from rolling dice for an hour. My pectoral muscles were sore and ropey, and my shoulders and arms burned with sharp, constant pain. I regretted taxing myself so much for a game, but I also wondered how something so simple could cause so much of an issue. It wasn’t normal, and I hated having to choose between living my life and feeling good. 

She hosted this same party again last night and I got to attend. I am sore and by the end of the night I was glad to be done with the rolling motions, but today isn’t an 8 or 9 on the pain scale like it was last year. My physical therapy sessions are so beneficial for my health, but I will be able to make it until my Friday appointment without trying to hold it together while I’m reeling in pain. I’m more sore than I am on an average day, but I don’t feel like I’m going to have a complete breakdown from being in pain. I can easily handle a little bit of soreness and as long as I take it a little easier today I will make up for everything with my stretching and workouts. This is proof that despite relying heavily on physical therapy and rest, I am making progress.

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Today’s lesson: Even if you feel frustrated because something isn’t changing, taking a look at the really big picture and having little mile markers is so helpful for keeping spirits high. I still may have a long way to go in being normal again (And maybe I’ll never quite get there), but any kind of baby steps I can take is still progress. I’ve already learned so much through my journey, and I trust God to be with me every step of the way. Staying positive and remembering blessings throughout every step helps me have a thankful heart. My path has helped me become more empathetic, kind, and understanding, and it has led me to my new forever family member, which is absolutely priceless.

Love And Pain

Pain and sickness are really difficult things to write about. Trying to describe things you’re feeling but  many people have never dealt with before is essentially attempting to put pen to paper about the way butterflies feel in the beginning of a relationship to someone who still has yet to experience it. You can use the right words, but they won’t really connect until they have something to relate it to.

For example, think about the way some of your first crushes felt, versus how actually being in love feels. They both have the same warm and fuzzy feelings as a base, but feel drastically different. That’s how I would compare temporary short-term pain, such as an injury or a broken bone,  to chronic, long-lasting pain. I’ve experienced both, and before getting sick I wouldn’t have had anything to draw from to compare to the new exhaustion chronic pain brings. You don’t ever get a break from chronic pain. Even when you can kind of ignore some of your problems on your good days, the bad days are right around the corner. I do a great job of not thinking too much about that when I am well, and I’ve gotten really good at living in the present when I can. Then, the bright side is that on bad days I know a good one just has to be right around the corner. Chronic pain is a vicious cycle, though, and wears you out to your core. Not only does everything hurt, but you also are always so incredibly tired from not being able to sleep. Whether your body is annoyed from being tense and having your muscles screaming at you all day long or your brain keeps you up thinking about the pain you’re feeling, you don’t get good rest. I don’t remember the last time I got in bed and just fell right asleep. It’s been years.

I’m constantly sending articles and trying to pull up scientific findings about my conditions to people I love because I want them to understand how I feel. God, I want to be understood. I hate feeling cranky because of my pain or having days where I can’t stand it anymore and just break down and cry. Granted, the latter are few and far between, but sometimes my body just can’t take anything else and needs some sort of outlet. Talking isn’t my best one because I want to help other people feel happy and good, so I don’t like to complain — or maybe I don’t know how to complain properly; I haven’t quite figured that one out yet. I love to write, but I don’t always have the strength, and frankly I don’t want to leave behind troves of essays on how much my body hurts.

I just don’t feel like anyone I’m incredibly close to has been in a situation quite like mine, and it’s minorly heartbreaking knowing that yes, I always have a shoulder to cry on, but I don’t have anyone who really gets it and can tell me that they know how I feel. That’s why I am motivated to write about my struggles. 

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Don’t get me wrong; I don’t want anyone I love and care about to ever understand chronic pain or any other kind of difficulties in life. One thing I’ve always been thankful for is that I’m the one with this problem. I would gladly take every pain away from the people I care about if it meant they didn’t ever need to face it themselves. Not only do I feel like God gave me a strong heart and will to keep pushing forward, but I think He gave me a beautifully optimistic outlook on things, and I’m really grateful for that. I think I’m handling the hurdles I’ve been thrown the best I possibly can, and I actually think that despite being a painfully average twentysomething, I am exceptional in accepting the negative things in life as a reality and then figuring out how they can turn into a blessing — or at the very least, something that doesn’t consume me. I have always said that I may have POTS, but POTS doesn’t have me. The same goes for my chronic widespread pain; it’s a big part of my life, but there’s no way in hell that chronic pain is going to take my entire life from me. I will count my blessings until the day I die, and today those are my loved ones, dogs, chocolate, Taylor Swift, Brad Paisley, and each and every one of you.